The first step has been taken: the development of a database that initially collects and systematises experiences in the German, English and Dutch language areas and makes it possible to evaluate the data material. The second step will be the development of a professional database in which interested parties will be able to search the data material. In this way, the collected material will also be made accessible to research patients and practitioners in the future.
Parallel to the work on the databases, further cooperating projects are to be acquired, with which a collected pool of evidence from other areas of experience and language areas will also be contributed and brought together in INDICA. We hope that this will make it possible to compile evidence even more quickly and multidimensionally and to organise an exchange of experiences quickly and easily.
Access to the accumulating information will initially be somewhat cumbersome. As long as no mature database system is available that allows access via a click selection, we need advice on how exactly a meaningful compilation and evaluation of the fundus should be carried out.
Therefore: Dear patients and practitioners! How would you like it, what would you like to know and research?
We expressly welcome suggestions in this regard, but first we need to receive the first n ~ 100 case reports in order to be able to start with the first evaluations.
Please help us to collect them quickly!
Join us now and create the evidence of Cannabis medicine of tomorrow!
We are happy if you support us. On the one hand you can do this by referencing our project on your channels and on the other hand of course by sharing your knowledge about Cannabis with us.
You can fill out our questionnaire and send us your feedback - e. g. B. to point out possible points of criticism and improvements or to congratulate us on our work.
"We want to give cannabis the place in modern medicine that is worthy of the plant's great potential."
Stefan from Berliner Cannabis-AID e.V.
The first version of the survey instrument was based on the statements that were collected from more than 20 interviewed patients about their experiences with Cannabis-therapy. Involved Doctors and pharmacists enriched the development of the survey with references to practiced diagnostic schemes and assessment methods for suffering and diseases.
However, our idea to split the data collection into one offer for practitioners and one for patients proved to be impractical and was abandoned with the version now available.
With this data collection, we aim to enable better and more complex recording of the experiences with treatment of patients and practitioners than what existed so far (e.g. Cannabis-related survey of the Federal Institute for Drugs and Medical Devices until March 31, 2022). We want to collect the experience of patients and therapists in order to be able to get important information for the use of Cannabis as medicine and to give impulses for promising research in this area.
Despite a long development work, we do not consider the present questionnaire finished. Rather, it should be continuously developed. However, this should not lead to a break and no incomparability of data sets.
We are also planning to offer special questionnaires on selected topics in the future so that we can pursue specific topics in a more dedicated manner.
We want to descipt the experiences from Cannabis-treatment, its challenges and problems, therapy steps and its results as precisely as possible from both patients and therapists (doctors, psychologists, physiotherapists, nurses).
Case reports are collected in such a way that a clear picture emerges:
(1) on the possibilities and limitations of Cannabis-treatment for certain diseases and conditions
(2) on therapy protocols and the results that could be achieved with them.
The data should record the treasure trove of practical experiences and in this way open up suggestions and opportunities to be able to learn on existing practical experiences when designing an own treatment attempts.
With this background, data is collected on the following areas:
INDICA is a project of the Merseburg University of Applied Sciences and the Berliner Cannabis Hilfe e.V.
Since 2017, we have been working under the direction of Prof. Dr. phil. habil. Gundula Barsch (Merseburg University of Applied Sciences) and a team of patients, scientists and doctors on the INDICA database.
The aim of the INDICA project is to set up an interdisciplinary database on Cannabis as medicine for information, research and investigation.
With your experiential knowledge, we want to collect information on the therapeutic possibilities of cannabis and in this way create evidence. In this way, we will help this plant find a place in modern medicine that does justice to its great potential.
Knowledge is a treasure. Our research shows that there is much more knowledge about Cannabis as medicine in the population than it seems. We want to mine this treasure trove of knowledge with your support!
The project of the "INTERDISCIPLINARY RESEARCH DATABASE ON CANNABIS (INDICA)" draws on the research approach of Citizen Science.
"It can be assumed that in experience-guided medicine there is already a head start in informal knowledge, e.g. about which pharmacological varieties of Cannabis are suitable for certain situations of need and which are rather not." (Prof. Dr. Gundula Barsch)
Whereas in the past, empirical knowledge was mainly passed on in the form of oral traditions or in paper form, today we have amazing technical possibilities at our disposal. With our IT-supported INDICA database, we can collect, organise and evaluate large amounts of expert knowledge on cannabis and derive evidence from it.
And what is the point of this?
INDICA stands for the project “INTERDISCIPLINARY RESEARCH DATABASE ON CANNABIS AS MEDICINE”.
The initiators are:
Both are mainly active for the German part.
These two actors have been joined by other contributors as work has progressed on the project.
For the Dutch part, this includes:
We are still looking for partners for the English-speaking part of INDICA.
However, the INDICA project is above all dependent on the participation of many, who together with their case reports create a valuable pool of information and knowledge for everyone - thes is in the best sense of the concept of Citizen Science.
The aims of the project are to set up, operate and further develop an information and research platform for Cannabis-Medicine.
The background is to open up the potential possibilities of Cannabis-Medicine quickly and widely for treatment, care and health promotion. The collection of case reports is intended to help create part of the relevant evidence.
Function 1: The platform is used to collect data on ailments and illnesses and their medical treatment with Cannabis, provided by patients as well as doctors/therapists.
We have our own questionnaire developed by ourselves, but we are open to other research projects and scientific ideas.
Function 2: The platform provides interested people information by presenting the collected data and later by giving them the opportunity to do their own research.
Function 3: The platform enables communication and is intended to serve the exchange between patients and their practitioners among each other.
Empowering patients and physicians:
The INDICA-project cannot currently rely on the financial means of a research project. The present beginning was implemented with a database tool (Lime Survey) available free of charge at the Merseburg University of Applied Sciences.
The website and the mailing lists are provided by the Berliner Cannabis-Hilfe.
The data should be used to develop evidence, with a concrete benefit for doctor and patient.
The aims of this line of research are:
To the idea and conception of the database has been worked on since 2019, depending on the available resources. Medical colleagues and, of course, patients who are currently undergoing official Cannabis-treatment or who are self-initiated with Cannabis-treatment have already been involved in this process. However, scarcity of resources, but above all the new challenges in the context of the Corona-pandemic, have repeatedly interrupted cooperation.
The database that is now available came about an intensive exchange. It is now available to resume interdisciplinary work and to create a pool of data cross disciplines that will benefit everyone who can benefit from Cannabis as medicine.
With a professional database, it should be possible for practitioners as well as patients and interested parties to research the fund of empirical knowledge themselves, to obtain information and thus to be able to benefit from the possibilities of cannabis medicine.
Modern methods of data analysis (e.g. artificial intelligence, internet research) should not only be used for the administration and systematization of a large data pool, but also lead to new insights.
It would be ideal to supplement the data collection with an app that uses self-tracking to collect data in everyday patient life and assign these to the INDICA-fundus.
In this project we do not work with or for other companies. For us, scientific integrity and independence are central guiding principles of our work.
But to be able to operate this project at all, we can imagine cooperating with companies while maintaining data protection and all other ethical and legal standards. This cases are e.g. special evaluations on certain questions or further surveys. These can be financed by companies. However, the data collected in this way, like all other data, is stored, evaluated and published exclusively by us.
If companies want to support our project to develop Cannabis as a medicine in general, we see this as an appreciation of our continued independent work.
The project of the "INTERDISCIPLINARY RESEARCH DATABASE ON CANNABIS (INDICA)" draws on the research approach of Citizen Science . The Anglicisms point out that the main ideas of such a research strategy originated came from the English-speaking world, above all from the field of environmental research. However, they have already established in German-speaking countries and are implemented in research projects with different content
Legitimate critical objections lead to Citizen Science
The background to the development of Citizen Science are critical objections to other scientific working methods that affect the method and the way of data collection as well as their statistical evaluation, interpretation and the conclusions derived.
The scientific monitoring of social developments, especially in the context of AI-supported modelling, in recent years has repeatedly made clear that the portfolio of data for a realistic depiction of processes is prone to errors - especially when it is collected from institution, that are "living in the ivory tower". The main reason is that important explanatory data will be overlooked or not accessible to a scientific data collection from researchers work with a exclusively theoretically framework.
Mathematical models are not always suitable to descript real developments and for forecasting them appropriately. Such research strategies are particularly error-prone when there are no feedback loops with lived empirical experiences. It is obvious that existing statistical relationships cannot be interpreted appropriately if there is no dedicated verification in reality and the voices of the researched have no place in the conclusions that worked out. As a result, there is a risk that interpretations of the data presented have little practical value or, in the worst case, ignore people's needs.
INDICA - a research concept for and with Cannabis patients
The fact that research on the subject of "Cannabis as medicine" is currently mainly on affected patients and not with them has encouraged us to give our project a fundamentally different strategic research framework. It should be pointed out that there are, for example, clear differences in the consumption patterns of affected patients who are in a phase of self-medication and users with a substance control disorder. A hasty judgment by experts and the resulting stigmatization causes fear to affected of being subject to a premature misjudgment. By including those affected people in the research work, this misjudgment with all its consequences for Cannabis patients can be counteracted. In this way, those directly affected patients, who are often forced to (still) be in the self-medication phase, can be spared from complications during treatment.
INDICA was created in direct cooperation between academically oriented scientists, partners of the civil society and actors, primarily from self-help Cannabis-patients in Germany. However, INDICA will also build a bridge to other countries according to this model and try to generate qualitative and quantitative data sets and knowledge over large areas and longer periods of time. All involved people agree that our research concept with the orientation to Citizen Science is best met:
"Citizen Science describes the participation of people in scientific processes who are not institutionally bound in this scientific area. Participation can range from the short-term collection of data to an intensive use of free time in order to be developed into a research topic together with scientists and/or other volunter actions. Although many volunteer researchers have an academic education, this is not a necessary for participating in research projects. However, it is important to comply with scientific standards, which include transparency regarding the data collection methods and the public discussion of the results.” (from the Green Paper Citizen Science Strategy 2020 for Germany, pdf, p. 13)
We want to use this research approach, which is recognized by science and has long been practiced in various fields of research, in order to open up the treasure of knowledge and experiences of Cannabis-patients in regular, but also in self-initiated treatments. The central idea is to generate knowledge about Cannabis as medicine through various participation formats for Cannabis-patients and practitioners and in this way to help Cannabis-medicine to a recognized place in the treatment of illnesses and conditions.
Why is the INDICA project a Citizen-Science-project?
Based on the central objective mentioned above, the INDICA-project has fundamental characteristics that distinguish it from clean academic research strategies and with which it is assigned to citizen science:
(1) The central research interests of INDICA have been and are already being formulated through the participation of people who hope to get help in overcoming diseases and conditions through Cannabis. This ensures that their perspectives in the research project are given central importance as early as the project planning phase.
(2) With this background, the survey instruments for data collection were developed, tested and approved together with the affected humans.
(3) While to be involved in development of focus and design of research Cannabis patients are active part in the research process.
(4) Cannabis patients are the main group of those who make it possible to build a research database with their data donation.
(5) They are also the ones who motivate their relatives, therapists or other affected persons to participate in data collection. In this way, regional, temporally complex and novel data sets on the subject of Cannabis as medicine are collected. These are collected via established web-based and analogue infrastructures.
(6) In turn, the data is evaluated according to priorities and with a focus on facts and relationships that have immediate practical significance for affected patients.
(7) The summary of the empirical findings and their interpretation takes place in a discursive process with the participants and in their real life references. With the inclusion of different sources of knowledge and far-reaching participation, original innovation potentials of knowledge generation are to be developed.
(8) The publication of the presented results and their public discussion until to the formulation of new insights complete the individual research steps in formats of active participation by Cannabis patients.
In this sense, INDICA is committed to modern, dialogical and participatory science communication.
Support for those affected patients and practitioners in the INDICA focus
It becomes clear that INDICA, with its reference to the strategies and methods of Citizen Science, stands for participatory and transdisciplinary research approaches. Through the early and comprehensive participation of Cannabis patients, their relatives and practitioners, the participants receive an equal position and are not degraded to "cheap assistant scientists". Rather, the expectation is that with Citizen Science innovative results can be presented that will make Cannabis more assertive as a medicine. With this idea, INDICA would like to contribute to decision-making in political and planning processes of health care and support those affected patients and their practitioners in relation to real-life, problem-oriented and real-life solutions to everyday problems.
1. Glad you made it to our survey...
And thank you for taking part this survey. Please do not be put off by the length of our questionnaire! We need your help!
2. Citizen Science
This data collection is based on the idea of Citizen Science. Means this research only works with the help of people who deal with a specific topic in a very practical way, who want to learn about it and also want to advance research on it. So only with you!
We assume that there is extensive empirical knowledge about "Cannabis as medicine", which, however, could not be used or disclosed due to prohibition. We want to change that. We trust that your knowledge can advance essential questions of research to Cannabis-medicine. In this respect: Become part of the swarm intelligence!
3. Before you start, what should you know/have ready?
Since many of you have a lengthy medical history, it may be helpful to consult your medical records when completing the questionnaire.
4. For work on the questionnaire
We kindly ask you to send the questionnaire in any case! Please even if you are unable or unwilling to answer all of the questions.
By the way, it's not a problem to take a break in between - the questionnaire is saved temporarily and you can start where you were up.
5. And at the end, a little thank for your efforts
At the end of the questionnaire you will find a button. With that you can have your entered data made available as a printable document. We offer you a format with the most important data of an anamnesis. Patients can use this as a template for discussions with their therapists. For practitioners, the file is suitable for documentation in the treatment documents and, if necessary, as preliminary work for a expert report.
Have fun with your contribution to the knowledge of "Cannabis as medicine"! Thank you again!
Prof. Dr. phil. habilitated Gundula Barsch (1958); since 1999 Professor of Drugs and Social work at University of Applied Sciences Merseburg;1994-1998 Director of the Department for Drug Users and People in Prison at the Deutsche AIDS-Hilfe, the national German AIDS Organisation
Born in 1980, trained industrial business management assistant and studied communication and management at Osnabrück University of Applied Sciences.
Since 1994 (judgment of the Federal Constitutional Court) he has been striving to change the negative image of Cannabis with its clichés, which have formed over the years of prohibition, and to focus on the numerous success stories of a cultivated plant of mankind.
As Managing Director of Medican Campus Germany GmbH, he works together with Rinus Beintema, who looks back on 50 years of Cannabis history with his Suver Nuver foundation in the Netherlands.
More than 30,000 people there have the opportunity to access high-quality hemp products via a social club structure.
Together with the Berliner Cannabis Hilfe e.V. he works on Germany-wide structures of self-help options.
Tel.: +49 591 142 035 94
Born in 1982, has been active in drug policy for over 20 years, including with the Green Youth and Green Party, as an employee of the German Hemp Association and Sens Media as well as Akzept, ACM/SCM, Schildower Kreis and LEAP.
Due to his ADHD-diagnosis, he received his “cannabis flower purchase exemption” in 2014.
In June 2014 he founded the Berlin Cannabis-patient-group. Maximilian is currently managing director of the KCG Competence Center Cannabis GmbH, is member of the spokesperson-team of the nationwide self-help network Cannabis as medicine within the ACM and board member of the Berliner Cannabis Hilfe e. v.
Tel.: +49 176 327 221 52
Born in 1967, Rinus Beintema has long been known as a Cannabis activist in the Netherlands. This has earned him the nickname “Robin Hood van de Cannabis”. He is called because he made the healing properties of Cannabis accessible to a large number of seriously ill patients.
With his company Medican Campus Nederland B.V. he will be part of a normalization of Cannabis supply in Europe.
His whole story >>here in the Hanfmagzin<< to read.
What INDICA has to do with evidence-based medicine
Evidence-based medicine is a new development within medicine. It sees itself primarily as a rational science of medical action, according to which medical art must follow scientific principles. With this guiding idea, reliable knowledge is comprehensively collected so that physicians and patients can make good and appropriate decisions for therapy in practice.
Various methods (including meta-analyses, randomised controlled trials, case reports) are used to search for evidence of the benefits of medical interventions. Five evidence classes have been defined to assess the scientific value of the studies presented. Meta-analyses of several randomised and controlled studies were declared to be the gold standard (evidence class Ia). The lowest evidence class (class V) has case series (case reports) or several expert opinions/experience reports.
Our database is a method to systematically collect case reports from both practitioners and patients on the major topic of cannabis as medicine. We thus join the effort to collect and process experiences with the therapeutic benefits of cannabis. With INDICA as a data collection on case reports, we are creating medical evidence that is to be recognised - even if in a low evidence class.
The data from the database can be evaluated with proven statistical methods and thus enable generalisable experiences and evidence on the therapeutic use of cannabis. With the groups of contributors, the database brings together both individual patient experiences and the clinical expertise of different practitioners - the best prerequisites for achieving empathic health care as quickly as possible, also with regard to cannabis, that integrates evidence, clinical experience and patient preferences.
The widespread introduction of Cannabis as medicine is currently also failing due to the uncertainties and the lack of information about the references in question, both among patients and the doctors treating them. However, this part of current social practice is contrasted with another part of life reality: Despite decades of prohibition, knowledge of the potential of Cannabis as a remedy in the management of diseases, as a complementary support to conventional medical treatment and as a helpful recourse in the management of conditions (e.g. speech disorders, social contact difficulties, sleep disorders) has obviously never been completely lost in certain circles of the population. Social science research since the 1990s has consistently found evidence that patients and sufferers have found the gain in managing their difficult situation to be so big that they themselves face prosecution, stigmatisation in their social environment and unpredictable procurement problems in order to obtain this aid (Barsch/Schmid 2018, Schnelle et al. 1999, Barsch 1996).
It can be assumed that despite decades of prohibition, so-called experience-guided medicine is practised in society with regard to the self-initiated treatment and/or self-medication of diseases and for the management of states of suffering (cf. Brenneisen 2001), through which valuable knowledge on the medical application of Cannabis has accumulated. INDICA takes this seriously.
The latest empirical studies allow the assessment that the dark field of self-medication with Cannabis is much larger in Germany than scientific and political estimates have assumed (Barsch/Schmid 2018).
In the dark field of self-initiated treatments and self-medication, people tend to resort to Cannabis complexes, which they procure in different pharmacological varieties and diversified forms of application on the black market. Varying in quantity and application, these have long been used also in less dramatic situations of suffering and thus not only in the worst case or for palliative purposes and help to improve the quality of life. In this respect, this wealth of experience obviously provides indications as to which phytocannabinoids in which variety are suitable for the treatment/management of states of illness and suffering and which are not. Obviously, a painstakingly collected body of experience has long since developed that proves that the potential of Cannabis as medicine can only be tapped if a suitable pharmacological variety can be used in accordance with the individual needs of the patient.
The experiences of Cannabis-patients of many years' underline very clearly that if the wrong choice is made, not only no effects can occur, but even negative effects can be triggered (cf. ibid.).
In this respect, it can be assumed that in experience-guided medicine there is already informal knowledge about which pharmacotypical varieties of Cannabis are suitable for certain situations of need and which are rather not. Furthermore, pilot studies underline that with reference to this background of experience, more and more promising cases of application with surprising findings can be identified. On the one hand, these will increase the need for Cannabis complex agents in various varieties, but on the other hand, they are also suitable for reducing expenses in the area of care, medical care and drug treatment (cf. Barsch, Schmid 2018).
In synopsis, the particular importance of starting to develop a research platform becomes imperative.
Barsch G (1996): Zur therapeutischen Anwendung von Cannabis – Ergebnisse einer Pilotstudie unter HIV-positiven und Aids-kranken Männern und Frauen. In: Cannabis als Medizin: Beiträge auf einer Fachtagung zu einem drängenden Thema. AIDS-Forum D.A.H., Sonderband 15-22
Barsch, G., Schmid, S. (2018): Selbstinitiierte Behandlung und Selbstmedikation mit Phytocannabinoiden – Ergebnisse einer qualitativen Studie unter Cannabis-Medizin-Patienten. In: Die Naturheilkunde 6(2018)95., 36-42
Brenneisen, R. (2001): Cannabis, ein Wundermittel: Hanf als Heilmittel und Stand der medizinischen Forschung in der Schweiz. In: Die Renaissance der Hanfblüte Cannabis, Medizin und Gesellschaft. Beiträge zur 8. Sarganserländer Suchtfachtagung. In: Abhängigkeiten. Forschung und Praxis der Prävention und Behandlung (2001)7., 22-29
Schnelle M, Grotenhermen F, Reif M, Gorter FW (1999): Ergebnisse einer standardisierten Umfrage zur medizinischen Verwendung von Cannabisprodukten im deutschen Sprachraum. Forschung Komplementärmedizin 6(1999), 28-36